417 research outputs found

    Growing the FAIR Community at the Intersection of the Geosciences and Pure and Applied Chemistry

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    The geoscience and chemistry communities have numerous common practices and dependency on data standards. Recent efforts from the International Union on Pure and Applied Chemistry (IUPAC) and the American Geophysical Union (AGU) are to explore and collaborate on approaches and sharing lessons learned on efforts to implement the FAIR Guiding Principles as they apply to data in their respective communities. This paper summarizes their efforts-to-date highlighting the importance of existing communities, Scientific Unions, standards bodies and societies in taking deliberate steps to move and encourage researcher adoption of the FAIR tenets

    Namaste Care in nursing care homes with people with advanced dementia: protocol for a feasibility randomised controlled trial

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    © Author(s) (or their employer(s)) 2018. Re-use permitted under CC BY. Published by BMJ.Introduction Many people living with advanced dementia live and die in nursing care homes. The quality of life, care and dying experienced by these people is variable. Namaste Care is a multisensory programme of care developed for people with advanced dementia. While there is emerging evidence that Namaste Care may be beneficial for people with dementia, there is a need to conduct a feasibility study to establish the optimum way of delivering this complex intervention and whether benefits can be demonstrated in end-of-life care, for individuals and service delivery. The aim of the study is to ascertain the feasibility of conducting a full trial of the Namaste Care intervention. Methods and analysis A feasibility study, comprising a parallel, two-arm, multicentre cluster controlled randomised trial with embedded process and economic evaluation. Nursing care homes (total of eight) who deliver care to those with advanced dementia will be randomly allocated to intervention (delivered at nursing care home level) or control. Three participant groups will be recruited: residents with advanced dementia, informal carers of a participating resident and nursing care home staff. Data will be collected for 6 months. Feasibility objectives concern the recruitment and sampling of nursing homes, residents, informal carers and staff; the selection and timing of primary (quality of dying and quality of life) and secondary clinical outcome measures (person centredness, symptom presence, agitation, quality of life, resource use and costs and residents' activity monitored using actigraphy). Acceptability, fidelity and sustainability of the intervention will be assessed using semistructured interviews with staff and informal carers. Ethics and dissemination This protocol has been approved by NHS Wales Research Ethics Committee 5 (ref: 17/WA0378). Dissemination plans include working with a public involvement panel, through a website (http://www.namastetrial.org.uk), social media, academic and practice conferences and via peer reviewed publications. Trial registration number ISRCTN14948133; Pre-results.Peer reviewe

    Addressing Facilitators and Barriers Related to Early Childhood Obesity Prevention in Rural Appalachian Communities

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    Through a community-focused needs assessment conducted in rural Appalachia, we gauged perceptions of facilitators and barriers related to healthful eating and physical activity for young children and identified suggestions for improvement. Thirty-seven key informant interviews and three caregiver focus group sessions were coded and analyzed for key themes. Limited community resources emerged as a barrier to both healthful eating and physical activity. Suboptimal communication about existing opportunities was also identified. Community members reviewed the needs assessment data and implemented initiatives to address identified needs. The importance of Extension-facilitated needs assessments in rural settings to shape health initiatives to local contexts is highlighted

    Development of the Communication Complexity Scale

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    Accurate description of an individual's communication status is critical in both research and practice. Describing the communication status of individuals with severe intellectual and developmental disabilities is difficult because these individuals often communicate with presymbolic means that may not be readily recognized. Our goal was to design a communication scale and summary score for interpretation that could be applied across populations of children and adults with limited (often presymbolic) communication forms

    Using the 'Social Marketing Mix Framework' to explore recruitment barriers and facilitators in palliative care randomised controlled trials?:A narrative synthesis review

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    BACKGROUND: Effective recruitment to randomised controlled trials is critically important for a robust, trustworthy evidence base in palliative care. Many trials fail to achieve recruitment targets, but the reasons for this are poorly understood. Understanding barriers and facilitators is a critical step in designing optimal recruitment strategies. AIM: To identify, explore and synthesise knowledge about recruitment barriers and facilitators in palliative care trials using the '6 Ps' of the 'Social Marketing Mix Framework'. DESIGN: A systematic review with narrative synthesis. DATA SOURCES: Medline, CINAHL, PsycINFO and Embase databases (from January 1990 to early October 2016) were searched. Papers included the following: interventional and qualitative studies addressing recruitment, palliative care randomised controlled trial papers or reports containing narrative observations about the barriers, facilitators or strategies to increase recruitment. RESULTS: A total of 48 papers met the inclusion criteria. Uninterested participants (Product), burden of illness (Price) and 'identifying eligible participants' were barriers. Careful messaging and the use of scripts/role play (Promotion) were recommended. The need for intensive resources and gatekeeping by professionals were barriers while having research staff on-site and lead clinician support (Working with Partners) was advocated. Most evidence is based on researchers' own reports of experiences of recruiting to trials rather than independent evaluation. CONCLUSION: The 'Social Marketing Mix Framework' can help guide researchers when planning and implementing their recruitment strategy but suggested strategies need to be tested within embedded clinical trials. The findings of this review are applicable to all palliative care research and not just randomised controlled trials

    Sedentary Behavior and Physical Function Decline in Older Women: Findings from the Women's Health Initiative

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    Sedentary behavior is associated with deleterious health outcomes. This study evaluated the association between sedentary time and physical function among postmenopausal women in the Women's Health Initiative Observational Study. Data for this prospective cohort study were collected between 1993–1998 (enrollment) and 2009, with an average of 12.3 follow-up years. Analyses included 61,609 women (aged 50–79 years at baseline). Sedentary time was estimated by questionnaire; physical function was measured using the RAND SF-36 physical function scale. Mixed-model analysis of repeated measures was used to estimate the relationship of sedentary time exposures and changes in physical function adjusting for relevant covariates. Compared to women reporting sedentary time of ≤6 hours/day, those with greater amounts of sedentary time (>6–8 hours/day, >8–11 hours/day, >11 hours/day) reported lower physical function between baseline and follow up (coefficient = −0.78, CI = −0.98, −0.57, −1.48, CI = −1.71, −1.25, −3.13, and CI = −3.36, −2.89, respectively P < 0.001). Sedentary time was strongly associated with diminished physical function and most pronounced among older women and those reporting the greatest sedentary time. Maintaining physical function with age may be improved by pairing messages to limit sedentary activities with those promoting recommended levels of physical activity

    Road Mortality Threatens Endemic Species in a National Park in Sulawesi, Indonesia

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    The emerging economy of Indonesia has triggered rapid infrastructure development that threatens ecological communities, including within protected areas. The national parks of Indonesia are renowned for their high levels of biodiversity and endemism, yet the impacts of road development within these parks remains understudied. We conducted road mortality surveys along a 21.8-km section of paved highway that bisects Rawa Aopa Watumohai National Park in Sulawesi, Indonesia from January to April 2018. We documented wildlife carcasses during morning and afternoon surveys and identified hotspots of road mortality for amphibians, reptiles, birds, and mammals. A total of 790 carcasses were observed during 16 surveys, amounting to 2.3 carcasses km−1, one of the highest levels reported for Asia. Wildlife recorded during our surveys represented 40 taxa, of which 15% are endemic to the Wallacea region. We documented two hotspots of road mortality for each major taxonomic group. We propose that mitigation measures be implemented at the largest hotspot for amphibians, one overlapping hotspot for amphibians and reptiles, and one overlapping hotspot for birds and mammals, for a total of three areas targeted for mitigation along this 21.8-km section of highway. We recommend the implementation of mitigation measures including highway undercrossings with fencing, reduced speeds with associated signage, and highway lighting at these three hotspot locations to protect the diverse and unique fauna in this national park

    Relationship between reproductive success and male plasma vitellogenin concentrations in cunner, Tautogolabrus adspersus

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    The gene for vitellogenin, an egg yolk protein precursor, is usually silent in male fish but can be induced by estrogen exposure. For this reason, vitellogenin production in male fish has become a widely used indicator of exposure to exogenous estrogens or estrogen mimics in the aquatic environment. The utility of this indicator to predict impacts on fish reproductive success is unclear because information on the relationship between male plasma vitellogenin and reproductive end points in male and female fish is limited. In the research reported in this article, we investigated whether the presence of male plasma vitellogenin is a reliable indicator of decreased reproductive success in mature fish. Adult and sexually mature male and female cunner (Tautogolabrus adspersus) were exposed to 17β-estradiol, ethynylestradiol, or estrone, three steroidal estrogens that elicit the vitellogenic response. Data were gathered and pooled on egg production, egg viability, egg fertility, sperm motility, and male plasma vitellogenin concentrations. All males, including two with plasma vitellogenin levels exceeding 300 mg/mL, produced motile sperm. Neither percent fertile eggs nor percent viable eggs produced by reproductively active fish demonstrated a significant correlation with male plasma vitellogenin concentrations. Male gonadosomatic index and average daily egg production by females showed significant, but weak, negative correlation with male plasma vitellogenin concentrations. Results suggest that male plasma vitellogenin expression is not a reliable indicator of male reproductive dysfunction in adult cunner exposed to estrogens for 2-8 weeks during their reproductive season, at least in relation to capacity to produce motile sperm or fertilize eggs. Male plasma vitellogenin expression may serve as an indicator of reduced female reproductive function caused by estrogen exposure

    Developing a topic-based repository of clinical trial individual patient data: experiences and lessons learned from a pilot project

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    BACKGROUND: Building a dataset of individual participant data (IPD) for meta-analysis represents considerable research investment as well as collaboration across multiple institutions and researchers. Making arrangements to curate and share the dataset beyond the IPD meta-analysis project for which it was established, for reuse in future research projects, would maximise the value of this investment. METHODS: Our aim was to establish the Cochrane repository for individual patient data from clinical trials in pregnancy and childbirth (CRIB) as an example of how an IPD repository could become part of Cochrane infrastructure. We believed that establishing CRIB under Cochrane auspices would engender trust and encourage trial investigators to share data, and at the same time position Cochrane to take steps towards expanding the number of reviews with IPD synthesis. RESULTS: CRIB was designed as a web-based platform to receive, host and facilitate onward sharing of de-identified data. Development was not straightforward and we did not fully achieve our aim as intended. We describe the challenges encountered and suggest ways that future repositories might overcome these. In particular, securing the legal agreements required to facilitate data sharing proved to be the main barrier, being time-consuming and more complex than anticipated. CONCLUSIONS: We would recommend that researchers conducting IPD meta-analysis should consider discussing the option to transfer the curated IPD datasets to a repository at the end of the initial meta-analysis and this should be recognised within the data sharing agreements made with the original data contributors
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